Notice2023-22493
Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children
Primary source
Metadata and text below are from the Federal Register, a public-domain U.S. government work. Always verify the official published version before relying on it for any legal matter.
Published
October 12, 2023
Issuing agencies
Health and Human Services DepartmentHealth Resources and Services Administration
Abstract
In accordance with the Federal Advisory Committee Act, this notice announces that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC or Committee) has scheduled a public meeting to be held on Thursday, November 2, 2023, and Friday, November 3, 2023. Information about the ACHDNC and the agenda for this meeting can be found on the ACHDNC website at https://www.hrsa.gov/advisory- committees/heritable-disorders/index.html.
Full Text
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<title>Federal Register, Volume 88 Issue 196 (Thursday, October 12, 2023)</title>
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[Federal Register Volume 88, Number 196 (Thursday, October 12, 2023)]
[Notices]
[Page 70681]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2023-22493]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration
Meeting of the Advisory Committee on Heritable Disorders in
Newborns and Children
AGENCY: Health Resources and Services Administration (HRSA), Department
of Health and Human Services.
ACTION: Notice.
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SUMMARY: In accordance with the Federal Advisory Committee Act, this
notice announces that the Advisory Committee on Heritable Disorders in
Newborns and Children (ACHDNC or Committee) has scheduled a public
meeting to be held on Thursday, November 2, 2023, and Friday, November
3, 2023. Information about the ACHDNC and the agenda for this meeting
can be found on the ACHDNC website at <a href="https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html">https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html</a>.
DATES: Thursday, November 2, 2023, from 10:00 a.m. to 4:00 p.m. Eastern
Time (ET) and Friday, November 3, 2023, from 10:00 a.m. to 2:00 p.m.
ET.
ADDRESSES: This meeting will be held via webinar. While this meeting is
open to the public, advance registration is required.
Please visit the ACHDNC website for information on registration:
<a href="https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html">https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html</a>
by the deadline of 12:00 p.m. ET on November 1, 2023. Instructions on
how to access the meeting via webcast will be provided upon
registration.
FOR FURTHER INFORMATION CONTACT: Alaina Harris, Maternal and Child
Health Bureau, HRSA, 5600 Fishers Lane, Room 18W66, Rockville, Maryland
20857; 301-443-0721; or <a href="/cdn-cgi/l/email-protection#3475777c707a77745c4647551a535b42"><span class="__cf_email__" data-cfemail="7a3b39323e34393a1208091b541d150c">[email protected]</span></a>.
SUPPLEMENTARY INFORMATION: ACHDNC provides advice and recommendations
to the Secretary of Health and Human Services (Secretary) on the
development of newborn screening activities, technologies, policies,
guidelines, and programs for effectively reducing morbidity and
mortality in newborns and children having, or at risk for, heritable
disorders. ACHDNC reviews and reports regularly on newborn and
childhood screening practices, recommends improvements in the national
newborn and childhood screening programs, and fulfills requirements
stated in the authorizing legislation. In addition, ACHDNC's
recommendations regarding inclusion of additional conditions for
screening on the Recommended Uniform Screening Panel, following
adoption by the Secretary, are evidence-informed preventive health
services provided for in the comprehensive guidelines supported by HRSA
pursuant to section 2713 of the Public Health Service Act (42 U.S.C.
300gg-13). Under this provision, non-grandfathered group health plans
and health insurance issuers offering non-grandfathered group or
individual health insurance are required to provide insurance coverage
without cost-sharing (a co-payment, co-insurance, or deductible) for
preventive services for plan years (i.e., policy years) beginning on or
after the date that is 1 year from the Secretary's adoption of the
condition for screening.
During the November 2-3, 2023, meeting, ACHDNC will hear from
experts in the fields of public health, medicine, heritable disorders,
rare disorders, and newborn screening. Agenda items include the
following:
(1) An update on the Krabbe disease expedited evidence review
update;
(2) An update on the Duchenne Muscular Dystrophy evidence review
update;
(3) An update by the ACHDNC Decision Matrix ad hoc topic group and
potential vote on revisions to the ACHDNC Decision Matrix;
(4) A presentation and discussion on the ACHDNC's conflict of
interest procedures;
(5) Ad hoc topic group updates; and
(6) A possible presentation on the National Academies of Sciences,
Engineering, and Medicine Workshop on Next Generation Screening.
ACHDNC will not vote on recommending conditions for inclusion in
the Recommended Uniform Screening Panel during this meeting; however,
Krabbe disease and Duchenne Muscular Dystrophy evidence review updates
along with a discussion and a potential vote on revisions to the ACHDNC
Decision Matrix may inform such potential future recommendations.
Agenda items are subject to change as priorities dictate. Information
about ACHDNC, including a roster of members and past meeting summaries,
is available on the ACHDNC website.
Members of the public will have the opportunity to provide comments
on any or all of the above agenda items. Public participants may
request to provide general oral comments and may submit written
statements in advance of the scheduled meeting. Oral comments will be
honored in the order they are requested and may be limited as time
allows. Members of the public registered to provide oral public
comments on all other newborn screening related topics are tentatively
scheduled to provide their statements on Thursday, November 2, 2023.
Requests to provide a written statement or make oral comments to ACHDNC
must be submitted via the registration website by 12:00 p.m. ET on
Friday, October 20, 2023. Written comments will be shared with the
Committee, so that they have an opportunity to consider them prior to
the meeting.
Individuals who need special assistance or another reasonable
accommodation should notify Alaina Harris at the address and phone
number listed above at least 10 business days prior to the meeting.
Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2023-22493 Filed 10-11-23; 8:45 am]
BILLING CODE 4165-15-P
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